In 1995, Jeannie Allen didn’t quite know how to tell her then-husband about her embarrassing health problem.
Her primary care physician told her it was all in her head and recommended she see a psychologist.
But Allen, now 56, knew better. She was suffering from persistent genital arousal disorder, also known as persistent sexual arousal syndrome.
"At first I thought it was just a physical awakening," Allen said. "All of a sudden I had these tingling sensations and I thought, ‘I’m not dead after all.’"
She tried to take care of the problem herself, only to find that relief only came for a few minutes before the symptoms began again — more frequently and more intensely.
Allen, a mother of three who lives in Burbank, Calif., had purchased her first computer around that time, so she used the Internet to research her constant feeling of sexual arousal.
She typed "high sex drive" and "oversexed" into search engines; the diagnosis that came back was that she was a sex addict.
Allen knew that wasn’t true. Her feelings were unwanted and they were quite distressing. She felt ashamed when the tingling sensations started. Sexual thoughts were far from her mind.
She spoke to her gynecologist. He told her she "was every man’s dream."
Her anger grew. She tried to imagine how her husband would digest the information — that doctors thought she was crazy — and decided not to tell him. Besides, she said, she didn’t want him to feel pressured, like he had to be constantly pleasing her.
So she told him the biggest lie of her life: that she was unhappy and wanted a divorce.
It took years until Dr. Sandra Leiblum gave Allen the words she needed to hear: She wasn’t crazy, and there was a name for her condition.
Leiblum is director of the Center for Sexual and Relationship Health at the Robert Wood Johnson Medical School in New Jersey and author of "Principles and Practices of Sexual Therapy," which touches upon PGAD.
The two met in 2001, when Allen also connected with other sufferers through a PSAS online support group, which she now moderates.
Leiblum defined persistent sexual arousal syndrome as "intense feelings of genital congestion and sensations that are typically unaccompanied by any conscious awareness of sexual desire" in an article published for the Women's Sexual Health Foundation in Cincinnati, a non-profit organization dedicated to educating women and doctors on conditions that may impact sexual health and function.
This article is an updated version of the one that first appeared in The Journal of Sexual Medicine (subscription required).
Paradoxically, she wrote, sexual activities intended to relieve the symptoms can reinforce the sensations or provide only temporary relief.
In fact, Leiblum said, the sensations can last hours or even days, and they truly are unwanted and intrusive.
The condition recently gained attention when it was featured on "20/20" and in an episode of "Grey’s Anatomy."
Persistent genital arousal disorder affects women of all ages. It isn’t known how many women are afflicted, because many feel too embarrassed to speak with their doctors.
Heather Dearmon, 34, of South Carolina, was one of the women interviewed on "20/20."
A stay-at-home mom, Dearmon was 21 and pregnant when she first experienced the unwelcome symptoms of the disorder.
"I simply woke up one morning and it was there," Dearmon said. "It bothered me from the very beginning. I had never had sexual sensations in the clitoral area that were separate from my mind or emotions."
At first, the sensations occurred only in the morning. Dearmon went to her gynecologist, who thought her baby’s increasing size might be pressing on her pelvic region.
But the birth of her son, Jonah, provided no relief. By that time, the sensations were happening morning, noon and night.
Dearmon said the only way to rid herself of the uncomfortable sensations was to masturbate to three consecutive orgasms.
It caused some strain on her sex life with her husband, Jeremy, who was supportive, but also frustrated.
"I wanted to be able to make love to my husband, but I was afraid to have sex if the sensations weren’t there," Dearmon said. "I treasured my time without the sensations. Unfortunately, our sex life suffered for years."
Doctors, including psychiatrists, couldn’t come up with an answer for Dearmon, either. She became suicidal.
"My whole life had been altered. I couldn’t even go out to lunch with friends," she said. "To achieve three consecutive orgasms takes a long time. I felt my whole life being robbed."
She checked herself into a psychiatric hospital, which she described as "awful." Six months later, she was at another one, where doctors wondered if it was "a behavioral problem, a way of dealing with stress."
"But it never linked up," Dearmon said. "I could be in a perfectly fine mood and it would start up."
Dearmon was about to embark on a long road trip in 2000 when she had a panic attack. She knew the car’s vibrations would be torturous, so she visited her primary care physician, who prescribed the antidepressant Paxil, a drug that lists decreased libido as a possible side effect.
"It had a good benefit," she said. "It put a damper on the sensations; they weren’t as strong. I could masturbate once and as time went on, it was every other day; then every few days. Now, I can go until the seventh or 10th day — and by then I can’t even concentrate."
Unfortunately, Paxil doesn’t work for everyone with PGAD. Some patients have said antidepressants actually act as a trigger to the disorder, Leiblum wrote.
Allen developed the condition four months after being diagnosed with post-traumatic stress disorder, developing carpel tunnel and having neck surgery. She had taken numerous antidepressants to combat those problems before and after the PGAD started.
A survey of women with the condition described numerous personal triggers: Caesarean sections, menopause, injury to the pelvis and emotional stress.
So, what exactly is the cause of this condition?
"The majority of women complaining of PGAD tend to be in relatively good health, well-educated and in long-term relationships," Leiblum and her partners wrote.
Other etiological theories range from brain lesion anomalies to pelvic nerve hypersensitivity or pelvic congestion to mechanical pressure against genital structures.
And while the symptoms still have persisted over the years, Allen said she has used several methods to make them more tolerable.
She said meditation helps reduce stress, and the less stressed she feels, the less intense the sensations.
Knowing there are other woman who have the same problem also has helped make her feel better.
"At this time, there is no effective cure," said Lisa Martinez, a registered nurse and executive director of The Women's Sexual Health Foundation. "This is a medical condition that distresses women greatly and we caution women against many of the unique solutions (such as electroshock therapy) that are being suggested."
Martinez said some patients have suggested using ice packs, massage and stretch techniques and anesthetizing agents to relieve the distress.
Patients also have reported relief after taking the mood-stabilizing drug Depakote, Leiblum said.
Overall, Allen and Dearmon are glad they went public with their stories.
"One woman ... came up to me and told me she had it her entire life, and when she saw me on TV she was thankful she wasn’t the only woman who had it," Dearmon said.
"I had always thought I was the only woman on the planet who had it, so it was rewarding for me to know that stepping out was helping other women."